The Silent Screams of Service Users by Steve Flatt and Pippa Hunter Jones

The silent screams of “experts by experience”.

There is a bloody battle going on in mental health services. It is not a battle fought with guns, bombs or knifes but the blood is real nonetheless. The suicide rate is rising, more people are dying of poverty and deprivation today than for many years. In 2013, in the UK, suicides reached a 13-year high, with population level data linking these suicides to austerity policies (Barr et al, 2015). The sick, frightened and disabled are the victims whose stories are rarely heard above the white noise of statistical analysis, learned papers delivered by earnest academics who are seeking to show how good their work is and please their political masters with tales of success and value for money.

The stories of those for whom mental health services, social services and benefit support did not work are airbrushed out with great swathes of digital images provided to the media in sound bites like, ““Having read thousands and thousands of transcripts, you can see the presence of the therapeutic relationship, and feel it in the same way as if you were reading a novel – you would feel emotions, fear, happiness. The written word will evoke emotion,” (Sarah Bateup, Ieso Health Independent march 20th 2017).

And reading a novel is the same as real life? – do we experience our lives as though we are in a novel? Ask a sufferer whose distress has not been lessened or help been offered, if their experience is like being in a novel, they will say it is more like a horror movie. Ask them if their story has been listened to and they will look at you as though you are an alien.

I attended the ERSC conference in York on 3rd March and listened to stories of service users whose experience of a “therapeutic relationship” left me feeling tearful and angry. Stories of prescriptive medicine, incarceration, labelling and a determination not to listen to the stories of the people the professionals are supposed to be helping.

There remains a powerful sense that despite the highlighting of our psychological wellbeing as a matter to be attended to, to improve the state of the nation, the reality remains that of business as usual; academics collate data; practitioners continue to deliver “evidence based” protocols that bear little relationship to a natural human interaction and ask clients to complete forms that measure the absence of failure rather than the presence of success and then declare that the intervention has produced a statistical recovery of better than 50%. The attention to the story and experience of the client is ignored – that the person has not changed their behaviour, been more sociable, able to be independent or carry out a meaningful activity is not measured or even recorded.

The McNamara fallacy describes the current state of mental health services beautifully:

“The first step is to measure whatever can be easily measured. This is OK as far as it goes. The second step is to disregard that which can’t be easily measured or to give it an arbitrary quantitative value. This is artificial and misleading. The third step is to presume that what can’t be measured easily really isn’t important. This is blindness. The fourth step is to say that what can’t be easily measured really doesn’t exist. This is suicide.” (Yankelovitch 1972)

The McNamara fallacy (also known as quantitative fallacy), named after Robert McNamara, the United States Secretary of Defense from 1961 to 1968, involves making a decision based solely on quantitative observations (or metrics) and ignoring all others. On this basis, according to the data the USA won the Vietnam war! The reason given for ignoring other “soft intelligence” is often that these other observations cannot be proven.

It is not the suicide of the service but of the person who experienced it – or rather – didn’t experience it. All the while the professionals continue to congratulate themselves on another superb set of statistics. Please remember that numbers don’t talk but people do!

“Partial or inaccurate information is often a crucial characteristic of the incubation period (toward disaster), but it is compounded by poor intelligence, the failure to seek out relevant data or interpret the available data properly. Cultures of denial, secrecy and protectionism, and fragmentation of knowledge about problems and responsibility for addressing them, are often implicated in such failures” (Turner and Pidgeon, 1997).

When will the stories of service users be listened to and the realisation dawn that an effective mental health service requires professionals to listen with a constructive ear to the people whose experience can tell us how professionals might be more effective? If we continue to assume that the professionals always know best and that their idea of a good service is based upon data, then the project that is “good mental health” is doomed to perpetual failure.

References:

Barr, Benjamin , Kinderman, Peter and Whitehead, Margaret (2015). Trends in mental health inequalities in England during a period of recession, austerity and welfare reform 2004 to 2013. Social Science & Medicine, 147. pp. 324-331

Turner, B.A., Pidgeon, N.F., 1997. Found in Martin G, McKee L, Dixon-Woods M (2015), Beyond metrics? Utilising soft intelligence for measuring healthcare data and safety, Social Science & Medicine 142.

Yankelovich Daniel “Corporate Priorities: A continuing study of the new demands on business.” (1972)

Some Thoughts on Seminar 5

Many Thanks to Helen Crimlisk for her contribution:

Reflections on attending the 5th ESRC-Co Leeds

I am familiar with the power of storytelling. It ought to be familiar to all doctors – we use the word “history” to indicate the nature of the dialogue between doctors and “patients” as they try to jointly make sense of the issues being discussed. The experience at its heart should be an act of co-production. It should lead to a collaborative effort to arrive at a place where joint understanding is arrived at and some thoughts on what (if anything) could or should be done next by either or both parties to alleviate or attenuate suffering (the origin of the word “patient”).

But how much do I really listen? Today, I was moved by hearing the stories of hope and challenge from Tricia Thorpe and Vanessa Findlay (delivered at their pace, without the opportunity to interrupt, question, comment or plan) who alluded to trauma, hopelessness and frankly poor quality of past services, but focussed on their own personal development and roles in helping others. Their testimonies had power, wit and value. The sense of having been heard and understood is a process which should have inherent worth, although all too often, the process is hijacked by other processes – administrative, artificial constraints and the need to make plans for the future.

I work as a psychiatrist. I am bound by professional, legal and regulatory processes which, despite benevolent intentions around care, safety, quality and governance can be stifling and frustrating (I’m not looking for sympathy, just relating the day to day experience of many of us). The focus on these issues is one of the reasons that I believe we have a health and social care system which is creaking and is why I am keen to look at ways of reconnecting with the reason most professionals are in the job – a desire to be compassionate – and nurture that quality in others, especially students and trainees. Hearing patient stories can help us understand the meaning of “quality” from the perspective of patient/service user as well as that understood and defined by professionals. Working together with patients or service users as an integral part of the teams is the most effective way of undertaking quality improvement or service redesign.

Co-production is the obvious answer isn’t it? And so I along with many other colleagues busy ourselves ensuring patient participation, peer worker involvement, service user engagement and experience based co-design methodologies, making co-production work.

“How much are you prepared to change your view?” was the challenge today.

“Because if you’re not, then there’s really little point in continuing”.

This is something we don’t talk enough about and I need continually reminding of. There is still a risk that we still behave as if co-production can be “added on” – an addendum to satisfy patient groups, grant giving bodies, commissioners, Boards. But – in co-production should expect an element of surprise, risk and paradigmic shifts of power. If it is too easy, we should question whether we are actually doing co-production or simply playing at it. There is a big risk of recreating a system based on familiar patterns and comfortable traditions. Today’s reminder about the inherently radical nature of true co-production in their exploration of the value of a truth and reconciliation process by Mick McKeown and Helen Spandler certainly raised my heckles. Also helpful and horrifying was Shirin Teifouri’s eloquent challenge that co-production as currently undertaken is infantilising and culturally exclusive. I intend to continue working within the system. I will be constrained. This does not mean that my actions are worthless or insignificant, but they will not be revolutionary. This means my attempts at co-production will be almost inevitably flawed.

Something which does not help is the artificial dichotomy between professionals and service users. Not only does it maintain power imbalances, but also fails to recognise the potential value of lived experience in staff members, who should be able to use their experience to enhance their professional roles. The recognition of the stories all of us have within it are one way of finding our common experiences and enabling us to bridge the gap and come closer to “the other”. We have started on this journey but have a long way to go. Engaging with and valuing this is work which will progress the story further, iteratively and painstakingly slowly, but nevertheless in the direction of the Utopia alluded to by Brendan Stone in the final inspiring talk of the day: an unachievable goal, but one still worth aspiring to.

A final reflection was how welcomed I felt at the meeting. I don’t recall previously having attended a meeting where several people checked in with me that I was feeling ok and not too “attacked”. Thank you.

 

Seminar 4: Contemporary Developments in Mental Health Policy and Commissioning Seminar Notes

Reimagining professionalism in mental health: towards co-production

Seminar 4: Contemporary Developments in Mental Health Policy and Commissioning: a help and/or hindrance to power-sharing

Hosted by the International Centre for Mental Health Social Researchesrc-big-logo

University of York, Friday 28 October

Many thanks to all the people who participated at seminar 4. Very lively and productive debates!

Below we have provided some written notes on the presentations, discussions and your concluding thoughts from seminar four.

The powerpoint presentations will be available on the blog shortly, and the ‘talking head’ videos and short videos of excerpts of presentations will be made available on the blog in due course, as will Adam’s poem. Please be reassured that if you have been filmed as a presenter or ‘talking head’, you will be able to see the video and decide whether or not you wish it to be made available on the blog.

Seminar 5 Reconciling regulatory knowledge with co-production will be on 3 March 2017 at the same venue (Research Centre for the Social Sciences, University of York).

 ESRC Co-production https://coproductionblog.wordpress.com/

Follow on twitter@ https://twitter.com/ESRCcopro

Best regards,

Martin & Pamela

 Anne Rogers: Commissioning of self-management support

There are social and economic drivers of meeting mental health needs – education, employment, housing and criminal justice services have to respond to the well-established impact of not being in work due to mental health problems. How does commissioning and mental health policy respond to this? There is a recognition that improvements are required, but there are many priorities for investment. Some commissioners have taken a more integrated, social approach such as in Nottingham which includes advocacy, open door project and other socially-oriented services. However, the hidden impact of bureaucracy prioritisation of risk management remains the ‘elephant in the room’.

There is a tension between local aspirations and those identified by NHS England for empowering people. There is a need to focus more on early strategic planning of lay involvement to provide an avenue for genuine engagement of individuals and communities in a meaningful way. A capability approach is required which focuses on what an individual values and can achieve.

Commissioning needs to be re-oriented towards understanding and enhancing the power of social networks. There is good evidence that behaviours within networks as a collective phenomena reinforce ‘unhealthy’ behaviours, but can be used positively for behavioural change. Self-management of our health and mental health involves weak ties within our networks (connections to people within communities such as shop keepers, taxi drivers, postman/woman). The power of these weak ties is under-estimated. In addition, there is evidence that participation in community organisations is associated with better physical and mental health, particularly among people on low incomes who are more physically active.

There has been a rise in non-medical aspects in NHS commissioning in mental health. For example, pets are valued for companionship and social engagement, but they are not routinely included on mental health care plans. There is good evidence that they support people’s well-being, but there are few opportunities for personal commissioning of pets.

Mapping social networks provides a positive disruption to what people focus on in their daily lives. Externalising away from the self is very valued. When people see their network they can see how they can mobilise it, or identify gaps to enhance their connectivity. Genie is a method of visualising networks and connecting people with local resources. It requires some resources locally to keep it up to date and live, but is a useful tool for people to use to enhance connectivity within local areas.

Karen Newbigging: Co-production in commissioning: Are we there yet?

The commissioning cycle is a process which involves assessing needs and assets; planning, which involves engaging with all sectors of the local population; securing provision of services through contracting and monitoring the services through measurement of outcomes. In reality, it is often more messy than this. What is crucial, though, is involving local communities in the process to ensure local needs are met.

Involved in commissioning for mental health, there are 209 Clinical Commissioning Groups, 152 Local Authorities, individuals with health and social care personal budgets and NHS England who commissioned specialised services. Commissioning is diverse, but social movements, activism and collective advocacy are important in the commissioning process.

Co-production in commissioning is an equal partnership throughout the commissioning cycle. It is a form of deliberative democracy and should be values-driven. It requires a move to asset-based approaches and a shift to a social model, which values the importance of social context, individual values and preferences. Decision-making should be transparent and accountable.

In practice, this requires:

  • Getting the foundations in place with proper resourcing and support
  • Framing the questions differently
  • Defining outcomes to commission against (‘I statements’)
  • Using a range of methods to co-design and co-assess services
  • Working with voluntary and community groups to engage seldom-heard groups
  • Confronting the ‘D’ (decommissioning) question

Where are local commissioners on the co-production journey? Looking at Arnstein’s ladder of participation, the impressions in the room are that commissioners are generally not. However, Lambeth Collaborative; UK’s first Mental Health Parliament in Sandwell; Making a Difference (MAD) Alliance in North West London; and Newcastle social prescribing scheme were cited as good examples.

Commissioners view commissioning as a rational process and emphasise getting the right structure and processes. Providers see it as a ‘fine-tuning’ process to get their services right or as a way of exerting leverage on commissioners. Service users and the public see the process as being a wide spectrum of activities ranging from direct involvement in care to more strategic purposes.

What do commissioners need to do to support co-production? Some of Karen’s suggestions:

  • do it together – deliberate purpose and methods
  • attend to organisational culture and build capacity for co-production
  • invest in and support user groups / patient forums / voluntary sector to build capacity
  • tolerance of ambiguity and understand and use a plurality of methods and approaches to engage all sections of the population
  • deliberate the limits – are there any?
  • build co-production into contracts
  • share and learn from successes and challenges

Joseph Alderdice & Danielle Barnes: From the street to the strategy

Joe introduced the Leeds Mental Health Strategic Partnership which includes the NHS, local authority and voluntary sector. This includes 150 people with lived experience and many identities, such as networkers, activists, artists, poets, peer supporters and researchers. Lived experience is essential to co-produced commissioning. In reality, this means connecting as humans not just in the boardroom but beyond this. Meeting in community cafes or neutral spaces helps to see commissioners as fellow human beings.

Based on shared values, it is possible to define priorities and competencies, and design and deliver training. “Community development is about working with people to find solutions, support them and then get out of the way”.

What’s in it for people who engage in the commissioning process. Reciprocity is really important – people must get something out of it rather than just contributing to it. Peer support is an important component of this, but also is validation of their perspective. Co-producing system change is like turning around an old ship getting blown away in the wind. We need to harness individual energies, but support them through the process.

It is difficult to influence change across whole systems where some people are very distant from co-produced activities or do not draw upon lived experience.

How genuine is co-production? Are the ideas / plans already in the heads of commissioners? How does co-production influence this?

In conversation with Danielle Barnes, Joe discusses the (West Yorkshire Finding Independence) WY-FI project which involves people who have lived experience of mental health issues, substance use issues, offending or homelessness. This includes peer mentoring. Co-production is about finding the problems and developing the solutions together. WF-FI project is an example of meeting people where they are rather than expecting them to ‘come in’ and receive a service. Trust and reciprocity are key to this process.

Where do we go from here? What can we take away from today?
Take co-production beyond this forum It’s all in the language, we’re all people! The term service user perpetuates traditional (not co-productive) services
Need to move beyond principles and work out more detailed strategies for co-production. ‘The devil is in the detail’ A buzz and sense of excitement that should enable us to spread the word – maybe even into ‘hostile’ territory…
Develop master class on co-production for commissioners. Karen Newbigging may have resources available Think about the financial implications of participation in co-production, especially for people with mental distress
Build alliances across stakeholder groups  
Shift focus from ‘mental’ health to optimal health. Question mental/physical health divide  

Seminar 3: Co-Produced Poetry by Adam Montgomery

To conclude Seminar 3 (hosted by the University of Leeds) spoken work artist/poet Adam Montgomery (aka “Ad-verse”) created this poem from the impressions and reflections of the attendees:

Co-production is underpinned by an authentic sharing of power

It would seem this notion causes some mental health professionals to cower.

Participatory citizenship creating spaces to be human & share.

Instead of us and them can’t it be that we all care?

We have more in common that not and that’s true across the board.

Allowing peers a chance to help each other is its own reward.

It helps to help and given the chance people will provide insight and support.

There’s great value to be found if we allow inclusivity of thought.

Social networks empower allowing space to develop relationship skills.

Money matters but surely there’s real value found outside the bills?

Who controls the purse strings? Can we dip into the pot?

Resources might be limited but co-producing can bring us a lot.

It’s an opportunity to do thing differently, changing status quo

Who describes the purpose? What are we trying to show?

What does co-production mean? Is there a clear definition?

Are services willing to share power or do they treat the term with suspicion?

Are mental health professionals essential for co-production?

We can invite them to play a part but do they want to be in the discussion?

Sustainability & transformation can be found by consulting all

Each can make a contribution be it large or small.

Some services currently operate on compulsion and coercion.

Will co-production allow for more democracy and co-operation?

Democracy redefined and power equilibrium shifted on the way.

Supporting resilience and survival of self but letting people have their say.

It shouldn’t be tokenistic, how do we make it authentic and true?

For genuine sustainable co-production what do we need to do?

Vested interests need challenging and minds opening would be a start.

Tapping into the human connection which we all hold in our heart.

Decisions made with people for people, services to fit users needs,

A person centred approach which encourages people to do good deeds.

Allowing people a chance to help others realising it helps to help & grow.

Positive outlets for effecting real change allowing hidden expertise to show.

More meaningful working relationships between services users and providers.

Acknowledging often the most expertise is found within those insiders.

The patients, the people being treated, those with the problems often hold solutions

These can often be found by enabling meaningful contributions.

SO many opinions in the mix, who’s to say which one is right?

Perhaps we all have some valid points without enquiries we won’t have insight.

Some are resistant to change, change takes time and time is money.

The complex nature of organisations and their cultures is far from funny.

The term can bring confusion, what does it mean and what does the language reflect?

I think it’s about all having their say and being treated with respect.

Given opportunities to play a part in positive changes for systems and self.

Knowing you’re valued can do wonders for self-esteem and mental health.

Self-esteems often taken a battering with decisions being made for you not with.

Together in coproduction we can hopefully make it easier to live.

Where does co-production live? It should be in the community.

For everyone to play a part and for all effected and involved to see.

A quality approach to develop excellent services, hearing the voices of all.

Allowing people to contribute with empowerment fundamental.

Interdependence, collective humanity, transformation & change.

Overcoming inertia and seeing room for systems to be rearranged.

Service user involvement and a willingness to share throughout

I know co-productions possible but that there are many who doubt.

Some people are resistant to change but that doesn’t mean we shouldn’t try.

Services can cause frustration but being heard can help good come from the sigh.

Taking time to consult with people letting them play a part with some ownership.

Empowering through real life opportunities and support should they happen to slip.

We’re all people with assets and issues whichever side of the needle we sit.

Co-production can be a positive thing with a need for clarity when defining it.

Who are you going to co-produce with and what will you create?

We’ve co-produced with mother nature to produce a very warm state.

So I’m sure some of you are wondering if the end of proceedings are near.

I’m happy to announce that at least for my bit the end is finally here.

ESRC seminar ‘Enacting co-production’ at St. Catherine’s College, University of Oxford on 17 February 2016

ESRC seminar ‘Enacting co-production’ at St. Catherine’s College, University of Oxford on 17 February 2016

 First of all, many thanks to all participants for an interesting and stimulating day. Your level of engagement was great, and your commitment to co-production and social justice very evident. Thanks too to the Collaborating Centre for Values-Based Practice for providing us with such a lovely venue and lunch.

The programme was full – arguably too full – but, that said, I wouldn’t have wanted to have missed any of the papers which were all great. Throughout the day power was a theme that emerged time and time again.  Addressing imbalances of power goes to the core of co-production, and space (in different forms) seems to be important for resisting power. I was heartened by a message I received from one of the participants who commented on our final discussion at the end of the seminar, ‘To me, it felt very much like the safe, shared space we were talking about towards the end’. This suggests that we were enacting co-production – not merely talking about it.

Here are some brief reflections on the presentations.

Introduction

(Click the links to download presentations)

Bill Fulford introduced the day’s proceedings with an overview of the work of the Collaborating Centre for Values-Based Practice at St. Catherine’s. Bill addressed the relationship between values-based practice (VBP) and co-production, pointing out that VBP is now being applied in the traditional bastions of evidence-based practice (EBP), notably surgery. Bill suggested that a balance is required between EBP and VBP, highlighting that this involves dissensus.  Dissensus is a decision-making strategy which respects and acknowledges people’s differing values. This contrasts with the usual organisational/institutional approach of seeking consensus. Bill explained the significance to co-production of the 2015 Supreme Court Judgement in the case of Montgomery v Lanarkshire Health Board. Following this ruling, doctors must now ensure that patients are fully aware of the risks (and alternatives) involved in any proposed treatment. This constitutes a new departure in how informed consent is implemented.

Following Bill’s contribution, I gave an overview of some of the salient points which arose in the first seminar.  Perhaps the key message in this was that co-production involves blurring traditional boundaries which separate the personal from the professional, the sharp distinction in roles between professionals, service users, peer support workers and informal carers. Equally, co-production requires a new approach to research which is more tolerant of ambiguity and uncertainty.  This view is expressed in the recently published N8/ESRC report N8/ESRC Knowledge That Matters: Realising the Potential of Co-Production. 

 The presentations

Some really important raised here which reflect the need to embed co-production in a broader social/civil movement. Sarah Carr drew on Cahn’s work ‘No more throw-away people: the coproduction imperative’, eloquently highlighting the need for external pressure in bringing about reform in mental health care.  Without external political pressure, organisations and institutions adopt or, more accurately, co-opt emancipatory terms such as co-production, applying them as an adroit strategy to perpetuate the status quo and existing power relations. The legacy of Goffman’s total institution is maintained, turning people into aliens and alienists. In brief, Sarah’s paper pointed to the necessity of not entrusting organisations to reform themselves, arguing that internal reform requires external pressure – hell-raising.

Peter Ryan followed Sarah by outlining the key principles and values of co-production based on power and control, reciprocity, an asset perspective, social capital, and redefining work.  The values identified by Peter appeared to resonate with just about everybody. What Peter subsequently provided was a really well thought through systematic framework for promoting co-production.  Peter’s model incorporated all levels of a system, from commissioning and organisational processes down to the micro level of everyday interaction. Partnership is key to the goal of creating a system which empowers people to look after themselves.  Peter presented a detailed and really helpful action plan for implementation.

The last presentation of the morning was by Ruth Allen who spoke engagingly about the need to re-imagine professionalism with co-production at the centre. Emphasising that professionalism should be developed through a synergy of personal and professional learning, Ruth argued against the traditional model of detached professionalism.  As Ruth put it (taken from the film ‘An ecology of mind’ by Nora Bateson), ‘A role is just a half-assed relationship’. This distinction between role and relationship summed up the views of many of us who believe that authentic relationships are central to co-production. Ruth’s presentation argued for systemic change and for greater sensitivity among professionals who can unwittingly inflict minor injuries in everyday interactions.

In the afternoon, Gemma Stacey’s and Philip Houghton’s paper (co-authored with James Shutt) representing the Critical Values Based Practice Network, was based on a study which investigated co-production or, more accurately, its tendency to be absent, in ward rounds. The paper critically interrogated how the exercise of power – a recurrent theme throughout the day – meant that patients were often not even routinely informed about their treatment and care. In co-production with patients Gemma and Philip have developed a guiding framework to enable busy professionals who may have their minds on target and efficiencies to enact shared-decision making/co-production. The model, developed by the Critical Values Based Practice Network, involves a practical step-by-step approach towards the three ‘i’s: being informed, being involved and being influential. Many commented on the usefulness of the model, suggesting that it might be adapted for contexts other than ward rounds. Lots of food for thought here.

The final presentation was by Ms Keeble who provided an insightful view of co-production in action by speaking about the development of the Bristol Co-production Group, initially formed to co-produce a change in mental health assessments. The Group, which was co-produced by Laurie Bryan (service user lead); Lu Duhig (carer lead) and Bill Fulford (academic lead) is based on ‘three keys’. These are: 1) active participation of the service user and carer; 2) a multidisciplinary approach and 3) strengths, resiliencies and aspirations of service users and carers. Among the valuable lessons that emerged from Ms Keeble’s presentation is the insight that the journey or the process of working towards co-production is an important as the destination. In other words, co-production is a learning process for everybody.  The positive outputs achieved by the Bristol Group include publications and the development of educational materials for mental health nursing students. The Group evidences the productive power of dissensus.

And finally

Overall, the day provided an opportunity to share ideas both on and in the spirit of co-production and, once again, thanks to all participants.

In my next blog I’ll post a list of points which emerged as a result of your reflections in groups.  These points will be used to develop a focus for future research collaborations and applications.

Pamela Fisher